Here’s What Happened When Japan Renamed Schizophrenia

One of the things that keeps mental illness stigma alive is that many psychiatric terms are widely misused. For example, many people still think “schizophrenia” refers to having multiple personalities or that being “psychotic” is about being violent.

In many cases, terms for mental illnesses as used by the general public have connotations held over from times when mental illness was very poorly understand. When common usage doesn’t keep pace with scientific research, fighting stigma becomes difficult: scientists learn more about mental illnesses, but this knowledge doesn’t make its way out into society.

Starting in the 1990s, a Japanese advocacy group led by families of people with schizophrenia started pushing for a radical but simple solution to this problem. They proposed that the easiest way to get rid of the outdated understanding of schizophrenia still common in the country among people without medical training was to rename the disorder entirely.

For most people in Japan, the term then used for schizophrenia, Seishin Bunretsu Byo (“mind-split-disease”) implied an untreatable disorder that people never recovered from and that made people violent and dangerous. The term was also associated with a legacy of inhumane laws present for much of the twentieth century that stripped those diagnosed with schizophrenia of their legal rights and often resulted in them being confined indefinitely in isolation.

The connotations of the term made it hard for doctors to discuss the diagnosis with their patients. In 1999, about half of all psychiatrists in the Japanese Society of Psychiatry and Neurology (JSPN) revealed a diagnosis of schizophrenia to their patients only occasionally. A mere seven percent told all their patients about the diagnosis as a rule.

As a result of this difficulty doctors had informing patients about schizophrenia, it’s estimated that as of 1997, about 167,000 patients with schizophrenia who’d spent at least a year in Japanese psychiatric wards didn’t even know their diagnosis.

So JSPN decided to rename the disorder. After all, it couldn’t possibly make the situation any worse. Starting in late 2002, schizophrenia became known as Togo Shitcho Sho (“integration disorder”) in Japan.

Over the next few months, the new term spread rapidly through the psychiatric profession. Within seven months, 78 percent of psychiatrists in Japan were using it.

As usage of the new term grew, it got easier to tell people about their diagnosis. Thirteen months out, 86 percent of doctors surveyed said they found it easier to communicate with their patients using the new term.

Based on that, you might guess more psychiatrists would start disclosing the diagnosis to their patients, and you’d be right. In 2002, 36.7 percent of patients were informed about their schizophrenia diagnosis. In 2003, that number was 65.0, and in 2004 it was 69.7.

The changes weren’t limited to the psychiatric profession. The new term also started to work its way into the general public, and into the media. In the ensuing decade-and-a-half, the image of schizophrenia in Japan has started to shed some of the historical weight burdening it down.

This year, a team led by researchers from the University of Tokyo analyzed 4677 articles about schizophrenia. They found that the portion of articles portraying people with schizophrenia as dangerous and threatening increased until the name change, then started to decrease. The same wasn’t true for articles about bipolar disorder, suggesting the timing wasn’t just coincidence.

Did renaming schizophrenia eliminate all stigma in one fell swoop? Of course not. But did it lead to real, meaningful progress? The answer appears to be yes, both in terms of how doctors and patients communicate and how the disorder is represented in the media. Words can carry deeply layered historical associations, and if we’re serious about spreading mental health awareness, we have to keep that in mind.

What d’you think? Would you like to see some psychiatric terms replaced?

I’m not entirely sure since I don’t speak Japanese and we’re talking about a translation of a translation (Schizophrenie -> Togo Shitcho Sho -> integration disorder). But my impression is that it’s “integration” as in the opposite of “splitting” — that it’s just a way of tweaking the translation.

I have felt for years that the ‘labels’ should change as science discovers more about a mental illness/injury. It is typical for patients to be told by their clinician not to worry too much about labels and diagnoses. More and more clinicians try to avoid them it seems, other than for purposes of insurance claims. But there is inherent value in someone being able to observe themselves and naming the condition they have. First, it may decrease isolation to feel that what you have has a name, has been researched, and others are out there just like you. Secondly, yes….it may decrease (or increase unfortunately) the stigma of both the clinical view (even mental health care practitioners carry prejudice), and the societies view. Thirdly, knowing your diagnoses can help you to learn even more about it as a patient.
Yes, I would love to see some terms change. I have what is usually referred to as Complex PTSD. Even those with traditional PTSD would beneift from that last D being changed from ‘disorder’, to S for Syndrome perhaps. But Complex PTSD may better be changed to something even more distinguishing from PTSD. When I reveal (selectively) to other healthcare providers for example that I have Complex PTSD, the only thing that is heard is the PTSD. No one even knows what the Complex is. The first question I usually get is ”Are you a veteran?’ (eyeroll). No. Any PTSD really is not a mental ‘illness’ so much as an injury. Perhaps Disorder (but there’s that word again) of Extreme Stress (even then, ‘stress’ sounds like I had a bad day at work…..how about trauma?) might be the better choice but it hasn’t taken off. No one can decide on just what to call it. Hell, there’s still a slice of ignorance out there that doesn’t even think it’s real. When DSM chooses not to even give it it’s own code…..it complicates things further making it even harder for clinician and patient. Speaking of the pervasive ignorance (and where there is ignorance there will inevitably be stigma), that brings me to the last set of diagnoses that I abhor: The ‘personality disorder’ dx’s, which carry likely thee most stigma of all. The term Borderline Personality disorder should all but be castrated from mental health. It never ceases to amaze me how many from within the mental health field even, still slap that label on people who clearly have Complex PTSD/developmental trauma. I have done some investigation and seen variants in the percentage of people diagnosed with BPD who have a history of child abuse and it has consistently held somewhere between 75 and 85%. Well then guess what? It’s not a personaltiy disorder at all…..it’s complex TRAUMA.
At the very least we should be using the CORRECT labels….and at best those labels do need to be fluid enough to morph and become more accurate with every new enlightenment the science of psychology graces us with.

When I got diagnosed with ADHD, there was a part of me that didn’t want to be “labeled.” But there was a stronger part of me that was relieved to know “wow, there’s a name for this thing, and there are other people out there who have it!”

I do like the idea of regularly updating names. Maybe as researchers learn more, psychiatry will move to a less discrete system that accommodates things like areas of overlap between different conditions, comorbid conditions, etc. better.

I agree. There is an enormous difference between depression (the mood) and depression (the illness). The term Clinical Depression was helpful, but the current label Major Depressive Disorder is even better. Another problem is the fact when you have to disclose your medications to new or emergency providers, the providers (including ED doctors) see that you take X medications, so you are “crazy” and your problem is “probably due to stress”.

True, and it’s not just depression — there’s a similar situation with anxiety disorders, and let’s not even get into what terms like “OCD” and “ADD” have come to mean colloquially. Thanks for commenting!

Let’s hope the term integration disorder doesn’t get abused like the term Schizophrenia and end up becoming disintegration disorder ps I have a diagnosis of Schizoaffective disorder and am wondering what term I can apply to my illness to make it more acceptable

Yeah, there’s always the danger that new stigmas will be associated with the new name. But at least if they’re less than the old stigmas, that’s some progress.

As far as how to talk about schizoaffective disorder in a way that doesn’t immediately create misconceptions, that’s a tough one. In situations where you don’t need an official label, maybe see if it helps just to describe it without giving it a name at all?